BrainCure: la esperanza azul para un grupo de enfermedades ultrarraras

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Historias de Luz Salud
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Científicos de la Universidad Pablo de Olavide han patentado un nuevo método que permite determinar de forma individualizada cuál es la combinación de medicamentos más efectiva en cada persona para paliar los duros efectos de las ENACH, un grupo de enfermedades ultrarraras que padecen unas 60 personas en España. Las ENACH se caracterizan por la muerte de las neuronas a causa de la acumulación de hierro en el cerebro. La investigación, denominada BrainCure, se ha desarrollado en el Centro de Andaluz de Biología del Desarrollo y está siendo dirigida por José Antonio Sánchez Alcázar. El fin último es lograr dar con una cura que evite las graves consecuencias que padecen estos pacientes como la pérdida del habla, la imposibilidad de tomar alimentos o la degeneración de la movilidad.

 

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  1. En resumen voy a contarte lo que me paso, naci hace 42 años despues de los nueve meses, a mi madre le provocaron los dolores y despues la anestesiaron conmigo dentro por lo menos 9horas, estuvimos a punto de morir las dos, dijeron que falto oxigenación en mi cerebro, pase una infancia, normal, con un poco de problemas en la escuela para captar las cosas, ya durante los 15 a 16 años, comence con dolores de cabeza intensos, y de los 18 años en adelante comence con convulciones durante 20 años, me diagnosticaron esclerosis en la parte izquierda de mi cerebro, que esa parte era más chica y por eso no oxigenaba bien mi cerebro, tuve problemas del habla y perdida de memoria a corto plazo, hace 4 años descance de las convulciones y ausencias, pero los dolores no sesaban, en marzo del 2016 comence a sentir extraña mis piernas, se doblaban en ocaciones yo crei que era exceso de trabajo, en agosto comence a usar baston porque no me equilibraba bien, llego el momento que comence a usar silla de ruedas porque mis piernas se cansaban mucho, el 29 de septiembre 2016 me internaron porque tube una crisis de ausencia con un poco de convulcion, y tube que moverme por lo particular para las resonancias, el 25 de noviembre me hicieron la ultima resonancia, el neurologo me dijo que tenia 14 micro infartos en mi cerebro y al parecer habia tenido muerte cerebral de bebe, pero a mis papas nunca les dijeron nada, y que tenia una neurodegeneración por acumulación de hierro en el cerebro, me dio unas paginas para que investigara y fue todo, es así como entre la investigación de las paginas llegue a ENACH y enseguida a ustedes,por eso estoy buscando ayuda porque aqui solo lo que me dijerón que podian solo detener un poco el avance de la enfermedad, pero no habia más que hacer, de un dia para otro cambio mi vida drasticamente, estoy casada tengo tres hijos y estamos buscando ayuda porque aqui en M´exico no se hace más para esta enfermedad rara. Tengo la resonancia, fotos etc

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